Anyone out there with Kidney Cancer?

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Anyone out there with Kidney Cancer?

by Meghan_C on Mon Aug 04, 2003 12:00 AM

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Hello, my name is Meghan and I was diagnosed with kidney cancer at the surprising age of 25. I underwent a radical nephrectomy and am alright as of this posting, but have no medical insurance to get checked out on a regular basis as I should. I would like to hear of others with kidney cancer and their experiences. Thanks!

RE: Anyone out there with Kidney Cancer?

by george_M_3 on Mon Aug 11, 2003 12:00 AM

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My name is George. I was diagnosed with renal cell cancer in May of 2002. I had no indications that I even had cancer. I had two incidents of blood in my urine after which my doctor admitted me to a local hospital. They did a sonogram of both my kidneys and told me I had a tumor on my left kidney that was bigger than the kidney itself. After they removed the kidney they then found out it was cancerous. In about two minutes time my oncologist laid waste to my entire world. She told me I was in stage IV which is terminal and due to the stage it did not respond to chemo or radiation. And that it had spread to the lower lobes of both lungs and that I had about a year to live. Well, that year was up the middle of May this year. I also have lost, due to almost constant nausea and vomiting, over 200 pounds in a 15-month time span. My appetite is just about nothing. Plus just about everything I eat has the taste of varying degrees of cardboard. I had been told that removal of my gall bladder could possibly alleviate the nausea. So that was taken out and did nothing. I am grateful that when I retired from my last job I was able to keep my health benefits. I am also on disability now. One of the other major problems now too is serious depression. That's something else without the prescription plan I have I would be broke from the medication alone. I have no idea how it went so long before it was discovered. I am a stickler for getting blood work done since I'm diabetic also. And I've gotten my A1C done every 3/4 months for the past 3/4 years. Yet the cancer never came up. By the way I'm 51 years old. Right now I'm very weak and have lightheaded spells. My two oldest children both live with me since at this point in time I can't be by myself. I had a spell of falling down too. Well if there are any more specific questions, send me a message. I hope that they caught yours before it spread like mine did.

RE: Anyone out there with Kidney Cancer?

by John_G_5 on Mon Aug 11, 2003 12:00 AM

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Dear Megan Take heart. Not everyone has the cancer return. However most doctors recommend CT scans every 3/6 months for the first two or three years and every 6/12 months thru year 5. I had a rad neph in '96, then in remission for over 5 years. It came back and I got info from local oncologists (not very knowledgeable) then found some experts in my region from Kidney Cancer Association and National Institute of Health in D.C. KCA is the best place to start. - Web: www.kidneycancerassociation.org I have since taken high dose interleukin 2 and entered a phase 2 clinical trial. Good Luck

RE: Anyone out there with Kidney Cancer?

by Sharyn_S_1 on Mon Aug 11, 2003 12:00 AM

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Megan, How blessed you are - at this point anyway; my brother (age 42) was not so lucky as he had a right nephrectomy in March of 2002 and was already in Stage III and had metastasis to his lung lobes. So far none of the chemo treatments have done much good, but fortunately it is still a slow growing cancer. I have worked in the health care field myself for over 25 years so I did all the research for him and we at last ended up at the Hillman Cancer Center (University of Pittsburgh) where there is an excellent kidney cancer oncologist, Dr. Joseph Baar. However, this prognosis is not good and we are all quite devastated as we just lost our beloved father 2 years ago. My brother's name is Jeff and he has a wonderful family for support (basically the closest are his mom, myself and one other brother, age 43!), but many more as well as an unbelievable number of supportive friends. This really does help, but he does turn to me for most of the time, especially when he is really having a bad day. He has not had chemo for a couple of months presently as he underwent lung surgery to have a large amount of fluid removed from his left lung which had accumulated over time and is not unusual when the lymph channels are not functioning properly as they don't with cancer traveling via the lymph vessels. At any rate, I remain faithful the Lord, God who has the final say and does heal and perform miracles. I pray continually for my brother - his strength, courage and peace as well as for myself to provide whatever it is he needs. He is such a sweetheart, not married and no children (which might be a blessing with all of this!). The one thing I do not agree with as far as this Cancer Center is concerned is they tend to leave the nutritional aspect of the cancer treatment more or less up to the patient and his/her family, which is so VERY important. The Cancer Treatment Centers of America (CTCA) are absolutely wonderful and we had considered going there except we would have had to travel to Tulsa, Oklahoma (the closest facility). They e-mail me all the time with great info. and are available 24/7 just to talk, support, whatever one needs even if you or your loved one are not being treated by them. Phenomenal people for sure! There is a book called "There's No Place Like Hope" written by Vicki Girard who is a breast to bone cancer survivor and was treated at the CTCA. They will send this book to you most likely free of charge if you contact them and explain to them you have had cancer or they can tell you the easiest way to purchase it. It is a truly remarkable book and I highly recommend it to cancer patients and their family/friends/support people. Also I have a book called "Just Enough Light for the Step That I'm On" by Stormie O'Martian. She is one special lady who is just blessed to write the true words, experiences and quotes from the Bible scripture to help one in any given situation. The last 4 years or so of my life have been quite chaotic, one thing after another and still going and this book has been invaluable to me as I read it almost daily. She is a Christian as am I, but it is a book I would recommend to a person from any religious denomination because of the way in which it is written. I was raised Catholic myself as were my two boys (now ages 21 & 28). I will keep you in my prayers and would love to hear from you at the above e-mail address. Perhaps I could get my brother, Jeff to e-mail you also! God Bless you and if I don't hear from you, never give up, Let Go, Let God! He is in control, not us. Sharyn Scharpf

RE: Anyone out there with Kidney Cancer?

by Shirley_K on Tue Aug 12, 2003 12:00 AM

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Hi, I think the best advice is to stay informed. I would join the kidney cancer assoc. web site, there are always new things being posted. Think positively and don't dwell on what can happen, think of your good health now and thank God you can enjoy it. Sincerely, Shirley

RE: Anyone out there with Kidney Cancer?

by Susie_T on Tue Aug 12, 2003 12:00 AM

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Keep the faith, Meghan. I had kidney cancer as well. The doctor told me there are no symptoms. It is usually found by accident. I was diagnosed with breast cancer but the mammogram did not show the tumor so a CT scan was done. The very small tumor in my right breast was found but so was a 2 cm shadow on my left kidney. I had a biopsy on it and it was kidney cancer. The surgeon said that if the tumor was contained in the kidney then all would be well. He would remove the left kidney and I would just go on with my life. I would be cured he said...but if it had spread to the outside to the lymph nodes there was no cure and chemo and radiation were not effective on this form of cancer. So the kidney was removed and God was with me. The cancer was only in the kidney. When I asked the doctor what I needed to do now he said, "don't play tackle football". lol Otherwise, I was fine. So don't go worrying. Don't spend your time thinking what if. Look at it as a cure and live your life happy and thank God every day that he gave you a miracle. Keep positive. I hear that from every doctor I have, from every cancer patient I have talked to. Prayer, positive attitude, and good nutrition. They all play a roll in keeping you health and keeping cancer away. Hang in there, Meghan. We are both going to make it to old age... *S*

Kidney Cancer Alumni

by Divagirl on Thu Mar 17, 2005 12:00 AM

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There are guite a few of us around. I am a 47 soon to be 48 years young. I think we ought to get together like in a area park, at the beach, canoeing/rubber rafting down the old coldwater creek and enjoy an afternoon of no phone calls, no bickering, well You get the idea don't you. Things can be modified but this is only some thoughts I came up with. SEE THERE ARE ALOT OF OTHERS OUT THERE WHO ARE JUST WAITING TO HELP.

Anyone Out There With Kidney Cancer

by Grandpa_Bear on Thu Aug 18, 2005 12:00 AM

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Meghan: Still another cancer survivor, had a 5.5 cm clear cell renal cell carcinoma removed about six months ago. I am 63 and doing just fine. The cancer was defined as being localized within the kidney capsule and did not spread to other organs. You will find if not already known to you that there are others here who feel as you do, alone and fighting something we know very little about. Take heart, you are not alone and many people here have a great deal of knowledge they can share with you to also provides assistance. Found that in treatment of RCC it rests upon you to be pro-active with your medical provider and doctors. There are help agencies such as Medi-Cal (specific to California) other states have similar help agencies to deal with the followups that are necessary to insure that the RCC does not return and in rare instances where it does return, you can get appropriate medical care. Like others have suggested, get an enhanced CT scan every six months for the first five years seems to be the best way to insure RCC does not return nor spread to other organs. Found that attitude, searching the net and sharing with others who have the same experience are the greatest help. Prayer also helps a great deal. Grandpa Bear
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